An account of my journey coming off 30 years of topical steroid use for eczema. My journey began on February 14th, 2013. Below are the three reasons I fought so hard to find an easier way through this!

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Monday, April 28, 2014

Here goes...the BIG update!

This is a long time in coming....just needed to clear my head for a few weeks to digest everything. This may be discombobulated to some extent given how much I want to say. I have been trying to organize my thoughts, but there is just way too much going on at the moment so I figured I would try to just start writing and see how it goes...

1. Life changes: For those following from the beginning, some of this will be old information. My husband and I bought 68-70 acres of land in Kentucky over 3 years ago. It is our dream to build a home there and have a small farm. About 20 acres or so are open land and the rest forest. We have talked to many people over the last few years about getting a modular home placed on the land, but given the road to the property is only wide enough for one vehicle - getting large equipment and whatnot down the road is going to take a lot of renovations. This of course means a lot of extra money. Well with me being out of work for a year, the money is no longer there. Once I get back to work, we should be ready to build in a few years. A month ago we went to Kentucky to interview for jobs and look at homes to rent - we figured if we lived in the area, we can do a lot of the land renovations ourselves over time saving more money. Well unfortunately the pay rates for the jobs there are significantly lower than where we are in NY. The lower cost of living does not make up for that difference as certain bills will not change with the move. This was a depressing realization and one we were anticipating, but we were still hoping for the best possible outcome. Now I just have to get back to work ASAP so we can pay off those fixed bills and then be able to move. This one thing alone has caused me a lot of time off the computer as I needed time to process my health, our job situation, and of course our future. Our dreams have been on hold for so long due to my health that I needed a time to truly grieve what I perceive as years lost. It is a good thing I am an adaptable person and can brush things off and move on. I am now moving on.

2. Education: I have signed up for a 1-2 year course for medicinal herbology. I want to continue helping people, but since I do not agree with a majority of the modern medicine model, I want to start getting an education on alternative treatments. I had considered a degree in naturopathic medicine, but figured I would start small for now. I plan to grow my own herbs on our farm in Kentucky when we do eventually move. This is something I will transition into over time - from nurse to holistic practitioner.

3. Criticism: Many people think I left ITSAN because of the donation incident. I explained in another post that this was not the case. There have been a lot of statements of criticism towards me that do not sit well with me - and if you do not believe in debates or addressing negative criticism, then please do your blood pressure a favor and do not read any further.

* Kristina said: "If someone isn't able to donate money, I get that (all the ITSAN admin do), but then at the very least, don't sit and debate it with others on ITSAN's forum and blog about it. That just causes more work for the admin and confuses people who are just joining ITSAN's forum and trying to get the help they deserve. Maybe that time can be better spent helping others on the forum or volunteering for ITSAN."
I will reiterate here that I was trying to HELP. I saw a plea for donations that came across as dripping with guilt - I see that as counter-productive and wanted the board members to know that from the perspective from someone still in a lot of pain, it can come across as heartless and make people want to leave, not stay and donate. I was trashed for this by more than one person and then threatened with a ban for undermining the administrators. I did not see how this could be confusing to new members. What I see that is confusing is having threads deleted over and over for censorship reasons. When I was new to ITSAN, this confused the hell out of me. I would see a thread one day and see a little bit of controversy but nothing major in my mind. Then the next day the thread was completely gone - no explanation or anything. I went over the rules and knew that censorship would take place but I was alarmed at the number of threads and posts that were being deleted. This is more confusing than keeping the content open and allowing people (GASP) to THINK for themselves. And as for helping others on the forum- I did a lot of that.

*Kristina said: "ITSAN's admin have worked their butts off -- literally night and day -- sacrificing way more than we probably should be at times. That is maybe what people should focus their attention on instead of nitpicking what the admin. does or doesn't do, what the website entails or doesn't entail."
You are absolutely RIGHT in that you all have worked your butts off for ITSAN in order to help others. There is no argument there and I have said this repeatedly. The mission of ITSAN is a good one. I am not disputing what you, Kristina, have personally done to help others as I know you have gone above and beyond. This is not a personal attack on you even though I am sure it feels that way. But I can assure you it is not. I am arguing some valid points that I feel are serious flaws with ITSAN. All organizations (just like people) have flaws. It is something that cannot be prevented. Criticism - especially that which is directed at wanting to improve an organization should be welcomed, not shut down and erased. As a private forum, ITSAN has the right to censor anything it wants to - and that is fine with me - I just choose not to agree with that and chose to leave because I did not agree with a lot of things. Here in the U.S., if we do not agree with a law, we can choose to live with it or we can choose to elect people who will change it. We have choices and ways to go about making changes. I had wanted to leave ITSAN many times all last year due to what I felt was bullying and unnecessary censorship. I know I am not the only one to feel this way and I know I am not the only one who has left voluntarily. I stayed to help others but over time realized ITSAN's policies went against my ethics and ideologies. Just because I agree with the basic mission does not mean I have to agree with the whole of the organization.

*The following quotes are from Tracy - another board member of ITSAN:

"So I made a plea for donations as a forum post. It really did come from the heart."
There must be a lot of anger in your heart for accusing people of having money but choosing not to donate it to ITSAN. Making people feel guilty does nothing to help your cause. It only preys on the weak minded. Yes you suffered for a long time and have reason to be angry because of that, but don't take it out on those seeking help for the same suffering. Pleas for donations should be professional. But again, ITSAN can do what it wants in this regard - I just choose to disagree with these tactics.

"I think the operative idea is that we don’t have any PROOF that treatment x or y hastens healing because we haven’t yet taken any ideas to any research entity to formally test in double-blind studies. "
Yes but you have no proof to state that time is the ONLY healer. Just because answers have not been found and researched with double-blind studies does not make this statement true. All you can state that is true is that you know of no treatment YET that will speed up TSW. This is the nitpicking I think Kristina was referring to, but words can be very powerful and to say that nothing but time heals is very detrimental to the psyche.

" What do you do when somebody starts posting things like, you’re all a bunch of scumbags and losers?"
Well JackBeNimble did this exact thing and basically said he hated most of the people on the forum - those that don't donate I am assuming. He called people leaches and scum. But you did not even respond to him publically and tell him this was not acceptable. You wrote posts after his hateful ones - you might as well have agreed with him. It was disturbing to say the least. I am sure given he is such a regular contributor (according to him), he will not be banned for making hateful speech.

*Dominic stated: " I just received my genetic tests back and I have tested negative: MTHFR C677T -/- and MTHFR A1298C +/-. Dr. Ben Lynch says "Again, a single copy of A1298C MTHFR does not appear to be harmful unless it is combined with the C677T MTHFR snp – known as compound heterozygous."'
The MTHFR A1298C +/- is still a POSITIVE result. "Does not appear to be harmful" does not mean it doesn't affect our healing. Obviously more research needs to be done. But a single copy of any mutation is still a positive result. This has affected the poll negatively. You are asserting false information for what benefit, I do not know.

There have been posts on Facebook stating that the active B12 and active folate can be harmful to your health. Apparently posts on ITSAN regarding these have been taken down. I have researched this and cannot find where the over methylation is harmful to one's health. Yes it causes side effects which I have posted on. But harm is not done due to the fact that once someone stops taking the vitamins, the side effects go away. Harm would be causing damage in that stopping the vitamins would not stop the side effects for an extensive period of time. This is my own opinion on what constitutes harm.

What bothers me the most is people are re-stating this as if it is fact without doing the research themselves. Side effects are not the same as harmful effects. Not all side effects are harmful. Let's look at immunosuppresants. They cause significant side effects - some of which are very harmful, some are not. They can cause severe liver damage. Once stopped, the liver may regenerate new healthy cells, but it will remain damaged for some time (with a small chance of long term damage). I was offered cyclosporin by my derm. I of course refused as the steroids already did damage to my liver and I had gotten it back to normal function. Was not about to damage it again. But people are allowed to discuss immunospressants on the forum. Shouldn't any and all talk about them be banned due to how dangerous they can be? You see someone said on Facebook that people need to be protected from harm - by censoring what is allowed to be discussed, then there will be no herd mentality to try something that may be dangerous. Even Tracy himself said that he tried vitamin C injections and hot saunas out of desperation. Do I think he needed to be protected from himself? Hell no. We as individuals have the ability to think for ourselves and to make our own decisions. If one is stupid (yes stupid) enough to try something without first researching the benefits and potential side effects and/.or harm, then one deserves what they get. I do not think anyone needs protecting unless they are severely mentally challenged. By some people's account - that would mean most of society is mentally challenged. I however believe we are responsible for our own decisions. I took full responsibility when I chose to get IV glutathione. My ND recommended it for a few weeks. I didn't take him up on it that same day or even that same week. I spent hours researching it before making a decision. A TSW vet - Jake did Vitamin C injections. I researched this as well and decided against it for myself. No one forces us to put anything in our bodies or to try certain treatments - we as individuals make that decision and anyone keeping information from others to "protect" others is a socialist and even Nazi like mentality. Do we as a people in general need protection from certain things? That's another debate for another day - there is a fine line when it comes to censorship. Censoring pornography or hate speech is one thing, censoring information on how something helped someone is crossing the line unless it has been PROVEN that that information is indeed going to cause significant bodily harm. Saunas can be beneficial to some, yet harmful to others but there is no worldwide ban on them. I say let people have all information that is not deemed life threatening and let them make their own decisions.

As for taking the time to debate all this - I really don't have much time on my hands right now with all that I am pursuing. But I find that staying silent is no longer an option for me on many levels. I used to be of the mentality of "Why vote? One vote can't possibly make that much of a difference". And "Why say anything? My voice isn't that important."

I'm here to say that one voice is important! Each and every one of us have the potential to make a difference in this world. We either choose to stay quiet and not stir the pot - or we can be brazen and bold and stand up for what we believe in. I have only just found my voice in the recent years. I was quiet and hated arguments and debates. I now realize that was not a good way to be (for me that is - we each have to make this choice and no one choice is perfect for everyone). Some people think I shrank out of the online world for the last few weeks because I was hurt by all the discord and conflict. Yes I was hurt, but that is not why I stepped offline. I was hurt, angry, and sad. And I needed time to think all these things through. Typically I can think quickly on my feet. However with the recent life changes and depressing decision of not being able to make our final move to KY, I knew I needed time to process things. I have a very thick skin when it comes to insults. I have been sexually harassed, hit, spit on, and verbally abused - and all that just at work. I'm not allowed to sue for such things as they are part of the job dealing with the imperfect physically and mentally ill public. I learned a long time ago to shrug that stuff off. I have also written an article about my distaste for further gun control in this country on CNN - we are talking thousands of responses (many of them were deleted by CNN due to graphic content) - some were really bad calling me a horrible mother and whatnot. Others thought my stance was great. Then there were the in betweeners. There were people who agreed with me on no more gun control but didn't like certain things I said. That was constructive criticism. There was so much of it, I have made a tentative plan to write a book - based on these criticisms alone as many people had a lot of good points. I sat there on the day it was published online and was awed by the sheer number of responses. I even saw some of the graphic insults just before they were deleted. Not pretty, but not once did I get upset or take any of it personally. I can take criticism and a lot of heat. If I'm wrong, I'll admit I'm wrong/ If I think someone else is wrong - I may say so, but only if I have a good enough reason to say anything at all.

So anyone can sit here and criticize me for wasting time debating what they feel is a moot point. You can criticize me for writing anything really and I frankly just don't care. I write for many reasons. To share information, to help others, and because I enjoy getting my thoughts out there. People don't just want words to coddle them. Some people who are suffering actually want to read about something other than suffering. They want to feel alive. They want to discuss and debate issues but maybe are too tired to do so, but like to read others doing so. Kristina asked me why I was saying negative things about ITSAN yet still encouraging people to stay with them. "Why even write a public post like this -- to confuse people? or/and to make yourself feel better?" she asked. Definitely not to make myself feel better or confuse people. Simply I just want information to be shared and allow people to make their own decisions. I just don't agree with some very basic but important forum rules so I chose to leave. I chose to debate some of the things people said simply because I think the important issues like freedom of speech/information are worth debating. If someone does not have an issue with ITSAN's rules and whatnot, then of course they should stay and support them, especially if they are getting a huge benefit from staying. If they donate, then they should continue to do so if they agree with what the funds are being used for. Just because I don't agree with them, doesn't mean I think all people should stop agreeing with them - that would be socialistic and having a Nazi mentality. Which I don't have - I want people to make their own decisions. And I would never make anyone feel guilty for staying with ITSAN, supporting them, and donating to them as I believe they are helpful in many ways. Some may think I am contradicting myself, but those smart enough will see that I am not.

So off to do those things I do: homeschool, cook, clean, study for another degree, write a book, get my garden going, research, and most importantly - spend time with my very dear husband and children!

4 comments:

Hi Tracy, I think you've written a great post here and there are heaps of great points you've made!

One thing I also didn't quite understand with ITSAN when I first joined up (and probably the main reason I never became really active) was the censoring of information about 'experimental' treatments and not so much of other medications like immunosuppressants... surely 'experimental' treatments would be a lot less harmful in the long run than going back to the doc for another kind of medication..

I don't know, but I do agree with you there.

And as for the genetic result MTHFR C677T -/- and MTHFR A1298C +/-... how could you not count that as a positive? I was only the MTHFR C677T +/- ... Thats a shame for the poll.

So glad to hear things are going good for you! Really exciting about your course also!

So glad that you're not keeping quiet about this Tracy, you're obviously onto something.I've certainly benefited from all the research and hard work you've put in. Being a life-time user of topical steroids I certainly shouldn't be feeling and looking this good only 14 months into withdrawal.Please keep up the good work and in time I really believe that your theory will be proven.

The quality of an organisation depends on the quality of the people and especially the leaders. What tone do they set, what are their directions, what actions they take, what words they say are all important.

It is hard to hide all their deficiencies, and time will be the factor to show if they are really good or that bad. At this moment, I guess we all know what's their situation and how poor their quality is.

With regards to your gene mutation sharing, I find it appalling that the admins reacted too quickly upon hearing some complains. There are plenty of threads, especially in the experiential forums, that have people complaining that things didn't work out. Yet the admins did nothing. Did they investigate the complains thoroughly, find out the root causes, see if there are ample justifications to "censor" information?

My Way Of Healing

Great Info on MTHFR!

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About This Blog

This blog is a written record of my journey through topical steroid withdrawal (TSW). Topical steroid addiction is real. I have been using topical steroids for the past 30 years. I first learned of TSW on 2/14/13, and immediately threw away all my creams that contained topical steroids. That is the day my journey into withdrawal began. I am here to listen, to give an account of what I am going through, to help others in their journey, and to give hope. Please message me for any questions, concerns, or if you just need someone to listen. Please feel free to leave comments about your experience - what works for you and what does not.

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My blog list has many TSW bloggers - it is in order of recent updates. Please look at the older ones as well - many of the blogs towards the bottom are those of people who are healed from TSW so their blogs are just as important and full of information! If you do not see your blog here and you are suffering with TSW, please comment on my most recent post so I can add you to my list!